0

Understanding PANS

Copy of Understanding PANS

Imagine having a bubbly, precocious child suddenly plagued by tics, compulsions, mood swings, and a loss of skills. Imagine going to various developmental specialists, neurologists, and psychiatrists searching for answers. You may hear diagnoses of OCD, autism, Tourette Syndrome, and even bipolar disorder thrown at you, while your child is put through hours of assessments.

What if all of the symptoms were caused by a strep infection?

PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome, and it effects 1 in 200 children. It occurs when an infection triggers an immune response causing brain inflammation and life-changing psychiatric symptoms. My latest post for Richmond Moms Blog is all about PANS and the important work of the PANS Research and Advocacy Initiative (PRAI) in Virginia. Read all about it here!

race-lp-banner_VCU

Advertisements
1

Ode to the Instant Pot

This post contains affiliate links.

This machine is incredible…life changing…inspiring…time saving…and overall the best kitchen appliance ever purchased. I put it through a major workout over Thanksgiving break making gallons of bone broth (recipe below) and prepped 20 freezer meals that can be cooked in 20-30 minutes  from freezer to table. I basically cooked dinner for the rest of the year.

Even better, it’s a crazy good deal right now.

Before hearing about the Instant Pot, I did not even know how a pressure cooker worked. A slow cooker cooks food with heat over a long period of time, but in a pressure cooker, food and liquid are sealed and come to a boil. As steam/pressure builds, food cooks faster. The Instant Pot is an easy-to-use multi-functional cooker that works as a pressure cooker, slow cooker, rice cooker, yogurt maker, steamer, warmer, and saute pan. There are preset programs for cooking soups, meat/stew, rice, beans/chili, porridge, poultry, multigrains, steaming, and slow cooking, as well as dual pressure settings. It is made of a 3-ply stainless steel cooking pot and comes with a steam rack, measuring cup, and serving utensils. Because I never used a pressure cooker before this one, it took some time getting used to the process. I looked to Pinterest for inspiration, converted my slow cooker favorites, and tested a few recipes from The Instant Pot Electric Pressure Cooker Cookbook. When I cooked perfect, easy-to-peel hard boiled eggs and in seven minutes, my mind was blown. Know what else took seven minutes? An entire spaghetti squash. Seriously. The Instant Pot was also great for cooking dinner on those hot summer days when I didn’t want to turn on the oven or stand over the grill. After spending a month with my Instant Pot, I sold my Crock-Pot.

Now we are heading into winter, and my Instant Pot made an amazing batch of bone broth. I bought a bag of beef marrow bones at Whole Foods for our dog shortly before she passed away, and that bag has been in the freezer since July. I threw those on a sheet pan and roasted the bones for 45 minutes at 375 degrees. This is optional, but roasting bones first helps create a broth with richer flavor.

Bone Broth:

Ingredients:

  • 1 onion, quartered
  • 2/3 cup chopped carrots
  • 2 celery stalks, chopped
  • 1 head of garlic, halved
  • bones (marrow bones, soup bones, chicken/turkey carcass, whatever)
  • 2 tbs. apple cider vinegar or lemon juice
  • water

Place vegetables and garlic in the Instant Pot first, then add the bones. Drizzle apple cider vinegar over the bones and let sit for 20-30 minutes; the acid helps extract minerals from the bones. Then fill the pot with enough water to cover the bones, but do not exceed the max fill line. Cover and seal the Instant Pot, select the “Soup” setting, and set the time at 120 minutes. After pressure cooking is done, turn off the Instant Pot and let it naturally release for 15 minutes before venting. Strain the broth and you’re done…maybe.

Instead of bagging and tagging my broth at this point, I returned the strained broth to the Instant Pot and hit the “Saute” button. This brought the pot to a boil and I reduced the broth by approximately 1/3 to create a concentrate. Then I let the broth cool, poured into ice cube trays, and froze to create individual portions that can be reconstituted with hot water through cold and flu season.

img_0177

Mic. Drop.

Bone broth contains easily absorbed minerals and amino acids, like calcium, magnesium, phosphorus, arginine, glutamine, and glycine. It supports the immune system to inhibit infections caused by cold/flu viruses and fights inflammation. The gelatin supports proper digestion. It’s the super food my husband hates…but I don’t care, he is still going to drink it and shut up about his man cold.

I followed this same process using the Thanksgiving turkey carcass to make turkey and rice soup. I picked off and chopped what meat remained on the carcass, then used the bones to make stock. Once the stock was strained, I returned it to the Instant Pot and added diced carrots, celery, onion, garlic powder, salt and pepper, two bay leaves, and the turkey meat and simmered for 30 minutes. I added one cup of rice at the end and the entire pot produced three meals worth of soup (dinner for us, dinner for my parents, one for the freezer).

So how can the Instant Pot be improved? Well, I have my eye on accessories at this point…like the Glass Lid and Yogurt Cups. I have also been reading articles about using the Instant Pot for canning, but as much as I love mason jars, that may be too ambitious for me.

0

Igniting the Flame

If you follow this blog, you know I often write about life as an autism mom. This year, our youngest son was also diagnosed with autism after we noticed his regression of skills similar to our oldest child. By 12-15 months, Thing 3 was “talking” on the phone, playing imaginatively, pointing to objects, initiating games like peek-a-boo and patty-cake. All that stopped by 18 months and was replaced with toe walking, repetitive movements around the room, fixation with his hands and fingers, and silence…no sounds coming from our baby except epic meltdowns nightly at dinnertime. In July, we finally had our appointment with the Transdisciplinary Autism Assessment Clinic at Commonwealth Autism. In addition to administering the ADOS (Autism Diagnostic Observation Schedule–an assessment of communication, social interaction, and play), the team included occupational and speech therapists’ assessments. It was a long morning of questions and observations, but we knew what the findings would be.

So here we are, raising three boys with moderate autism.

Part of me was sad. Regressive autism is crushing–to see your child struggle with actions and words that used to be easy. On the other hand, life with autism is normal to us. Around the same time Thing 3’s language and social engagement vanished, there was a workshop on regression sponsored by the National Institute of Mental Health in Maryland that focused on the development of infant siblings of autistic children, but overall the National Institutes of Health grapple to understand the neurological changes, immune responses, and other physiological causes of regression. In an attempt to find answers, our family was evaluated by a genetics team at the University of Virginia. They completed a microarray analysis, which detects possible chromosomal abnormalities, and that revealed nothing out of the ordinary. The next test to be completed is called a DNA extraction using blood samples from Thing 1, me, and my husband. This testing did not exist when we took Thing 1 to a geneticist six years ago, so we are excited to see what it may reveal.

Autism research becomes a touchy subject when people argue for neurodiversity versus “curing” disorders. I accept my children for who they are and wish the world understood their struggles and respected their dignity…but I would be a liar if I didn’t say I would love to take away those struggles. In an attempt to contribute to the body of research, our family signed up for SPARK. SPARK is an online research partnership involving 50,000 individuals with autism and their families attempting to accelerate research, coordinate those findings among medical institutions, and advance the understanding of autism. Over 20 medical schools have joined SPARK, and SPARK provides those researchers with medical and genetic information from participants like us. When we signed up, we completed questionnaires about ourselves and our children, then sent SPARK our saliva samples.

img_7229

Special needs parenting cannot only be about IEP battles, inspirational quotes, and memes about coffee consumption. While those are all very true, I want to know WHY my children have autism. I know about ASD and ABA, IEP’s and IDEA, BIP, plenty of SIB’s, IFSP’s, ADHD, OT, SLP, and the whole alphabet soup. But why does this condition impact all three of my children? Perhaps new research will lead to custom interventions and therapies tailored to each child. Will new research explain the systemic medical problems related to autism, like immune deficiencies, seizures, and gastrointestinal issues, and therefore lead to better treatments? There simply is not enough research or funding to answer these questions, and SPARK looks to bridge that gap.

I was shocked to hear many of my friends in the autism community never heard of SPARK. I hope you share this information with other families affected by autism and be the spark that ignites a flame in the lives of others.

 

0

Suck It Up or Suck It In

This past spring, I was in a funk. It was frustration (seeing autism red flags in Thing 3), exhaustion (Thing 2 still not sleeping), and burn out (lethal mix of immature students and their psycho parents). When I am stressed, I do three things: eat, drink, shop. By the time July rolled around, I finally stopped eating my feelings and decided to get healthy–because I was tired of feeling lethargic, and raising three kids on the spectrum required more dedication to my own health.

Weight loss is about setting goals and maintaining control, and eating less is more important than exercising more. For me, I maintain control by streamlining and simplifying. My husband and I joined Weight Watchers in 2012 and had success with that program, so we started religiously tracking points again this summer. I returned to the habit of meal planning, creating a weekly calendar for breakfasts, snacks, lunches, and dinners and prepping those dinners in advance. Once a month I create at least 25 meals to stock our freezer. On Amazon Prime Day, I bought an Instant Pot for an amazing price so those dinners go from freezer to table in 20-30 minutes, and all I do is push a button, which keeps us from hitting a fast food drive-thru on busy weeknights. I also joined monthly accountability groups led by my high school friend (a Beachbody coach) for extra support. I check in daily and tell the group what I ate, how I exercised, and everyone shares meal planning tips and recipes. I tried Shakeology and loved it, and now those shakes are my breakfast. They are 130-160 calories depending on flavor, keep me full until lunch, and almost completely banished my sugar cravings. Only downside is they’re freaking expensive, so I had to break up with Starbucks to afford them… $4 for a latte versus $4 for my “daily dose of dense nutrition.” I’m on target some weeks more than others but lost 9.8 pounds so far, and my husband is down 13 pounds.

So what does meal planning look like? Cooking Light has a cool interactive dinner planner, and Organized Home provides tips and printables to get you started. I don’t really understand people who plan menus before shopping because I work in reverse. I buy meats on sale and plan menus from there, using Pinterest and my cookbooks for inspiration (I try one new recipe each week). We buy meats in bulk once a month, then visit the grocery store weekly for produce, milk, etc. So here are two sample days to show how I survive Weight Watchers and the new SmartPoints system…

Monday:

Breakfast: Shakeology (vanilla blended with coffee and ice — 3 SmartPoints)

Snack: Coffee with 1 tbs. creamer (1 SmartPoint), hard-boiled egg (2 SmartPoints)

Lunch: Leftover Chicken Piccata (3 SmartPoints) and 1/3 cup egg noodles (2 SmartPoints)

Snack: Banana (0 SmartPoints) and Babybel Light cheese (1 SmartPoint)

After-School Snack: Apple with PB2 (1 SmartPoint) OR Cheez-It crackers (5 SmartPoints)

Dinner: Low-carb wrap (2 SmartPoints) with romaine lettuce (0 SmartPoints) and homemade chicken salad (made with Greek yogurt instead of mayonnaise — 2 SmartPoints)

Snack: 2 cups SkinnyPop popcorn (2 SmartPoints)

Tuesday:

Breakfast: Overnight oats (1/2 cups oats, 1/2 unsweetened cashew milk, 1/4 tsp. cinnamon, 1/4 cup diced apple — 4 SmartPoints)

Snack: Coffee with 1 tbs. creamer (1 SmartPoint) and Siggi’s strawberry yogurt (3 SmartPoints)

Lunch: Leftover red beans & rice with turkey sausage (6 SmartPoints)

Snack: Apple (0 SmartPoints)

After-School Snack: Larabar mini (4 SmartPoints)

Dinner: Homemade corn and potato chowder (6 SmartPoints)

Snack: 2 cups SkinnyPop popcorn (2 SmartPoints)

That leaves me enough wiggle room within my 30 daily points to enjoy a small second helping at dinner, or a slice of banana bread left in the copy room, or that piece of chocolate my coworker brings to a meeting, or a glass of wine after dinner (4 SmartPoints for a 5 oz. pour).

For me, though, diet alone is not enough. To tone this mombod, I need to work out 3-4 times every week. I pay $10/month for a gym membership and head there on weekends for a mix of cardio and strength training. I tackle cardio first and spend 30 minutes on the rower or elliptical. Then I opt for machine weights…or if I feel ambitious, I’ll grab a kettle bell and follow this routine. During the week, I complete a couple Focus T25 workouts. Even though his oblique knee push-ups make me want to cry, I try to follow Shaun T’s advice to not over-do it and work out at least every three days.

It is hard to push play after the Spanx come off at the end of a long day, so we try to get moving as a family. We take a lot of walks after dinner–either around our neighborhood or following the trails at a county park. My kids love these hikes, especially when they include rocks, bridges, and bodies of water. We let Thing 1 and Thing 2 set the pace, and often their skipping and prancing turns into running. I’ll gladly tackle a two-mile jog if it tires them out before bedtime!

nature_walks

Thing 2–the kid with endless amounts of enthusiasm and energy–usually quits with 1/2 mile left to go so he can commune with nature. While he rode on my back, he kept saying, “I speak for trees.”

img_7054

The family that sweats together (and recites The Lorax together), stays together.

img_7065